On a quest for better health
This is just a quick post to remind everyone that it’s a new year and a new quarter, so it’s time to do all the things: swap out your toothbrush; swap out your face masks (they’re good for about 40 hours of use); fill your pill caddies; change your HVAC filter; put more salt in your water softener; check your smoke alarms. Whatever you do quarterly, this is your reminder.
Okay. I will now resume watching college football bowl games.
Happy 2024, Y’all!
You probably don’t remember me saying that I don’t typically make New Year’s resolutions, but it’s true. I make maybe one a decade, and then I usually forget all about it.
But what the heck. I feel like making one this year, however futile it may be. This year I resolve to be less hard on myself.
I’m not the person I used to be. My physical limitations prevent me from doing the things I’d like to do – the things I used to do.
I’m no longer as organized, as squared away, as I used to be. And while I still aspire to continue downsizing until I have less stuff to wrangle, I also need to find a way to be okay with the clutter in the meantime.
My memory is shot to hell. I just don’t remember things. It’s alarming and discouraging, but I’m finding ways to deal with it. I try to do things as soon as I think of them, so I don’t forget. This means that I don’t necessarily do things in an orderly fashion any more. It’s more like I see something and remember what I meant to do, so I do it right then. Then I sit down and rest. Next time I get up and move around the house, I see something else I meant to do, and then I do that. No coherence, but at least I’m still getting things done.
I also don’t batch as many errands as I used to do. I just don’t have the executive function or the energy to deal with a long list of things to accomplish in town. So I do one or two as soon as I figure out what I need, and resign myself to the fact that I’ll have to do fewer things at a time and ultimately make more trips in order to get everything done.
One of things I did in the past year or two to help with my forgetfulness was to get a password manager. I resisted getting one for a long time, but I’m finding it very helpful and I’m glad I did it. [Although I got a family account, Spousal Unit *hates* using it. That’s fine. They don’t have to use it for their stuff, but at least they know where to go look for our joint passwords if it’s an account I set up and I can’t remember the password.]
I also created a morning checklist and an evening checklist to help me remember to take my meds and do health and hygiene tasks, but I need to get into a daily practice of using them. I also should probably get a whiteboard calendar and start logging doctors appointments and such where Spousal Unit and I can both see them and keep track of them.
I hate chaos. I hate disorder. I hate clutter and untidiness. And I intend to keep working to bring order to the chaos that is our small house still overflowing with items from our larger previous house.
But, in the meantime, and from now on, I resolve to be less hard on myself about it. I am no longer the person I used to be. I cannot continue to hold myself to standards I can no longer meet. It accomplishes nothing aside from making me feel bad about myself and my situation.
I can continue to learn, to discover new hacks and accommodations that help me deal with my limitations. I can implement these techniques and use these aids. But I can also give myself grace. I can accept that I am no longer the person I was. Accept that I can no longer do the things I used to do, in the ways I used to do them.
People like to argue that anything is possible if you just believe and try hard enough. “You just need the right attitude!,” these people like to say. In the chronic illness/disability community, this is known as “toxic positivity.” The truth is, you can’t necessarily change reality through hope and hard work. Especially if you’re from a marginalized community.
I can’t become healthy and abled from wishing it so – I know, I’ve tried for years. I can’t become healthy and abled through eating right, exercising, or taking the right supplements – I’ve tried that for years too. But the toxic positivity people are right about one thing – I *can* control my attitude.
So I choose to give myself grace for my circumstances and my state of being.
Rather than chasing a pipe dream of restored health, I choose to pursue adaptation to my current health. I choose to pursue acceptance, to seek a zen-like acceptance of my reality. I choose to walk the path of the Serenity Prayer: To accept the things I cannot change, to change the things I can, and to be able to tell the difference.
That is my resolution for 2023.
A popular topic of conversation on Disability Twitter is what we carry with us when we leave our homes to help manage our conditions. Recently, my cousin asked me the same question, so I thought I’d show you all what I take with me whenever I leave my house.
[Note: I try to find small containers to use inside my bag/pack whenever possible, because ounces become pounds when you’re carrying a bag/pack for a long time.]
Safe soap. I repurposed a small spray cylinder by emptying it, cleaning it, and filling it with a soap that is safe for me to use. I react to the commercial soaps available in public bathrooms, so carrying my own soap with me allows me to wash my hands when I’m away from home.
Alcohol wipes. These have a multitude of uses, including sanitizing my hands and inhaling the vapors as an anti-nausea technique. Since I am allergic to hand sanitizer, this is what I use as an antiseptic. They’re also useful for cleaning my hands/face when I have been exposed to an allergen.
Water bottle. I actually carry two. An 800ml (27 ounce) bottle filled with filtered water for drinking, and a 12 ounce bottle filled with 8 ounces of filtered water for mixing with a medicine that requires diluting. [An 8 ounce water bottle would be more efficient and take up less room, but I couldn’t find one.]
Tissues. For runny noses, etc.
Lip balm. For dry lips.
Sunscreen. A small container of safe unscented sunscreen, meaning I don’t react to any of the ingredients. I use a mineral/barrier sunscreen for my face.
Foam ear plugs. Good for loud movies, etc. I keep a pair in a purpose-built container My Boomer Parent got at an air show. You could find something similar online. Ear plug holders are also often available at military uniform stores.
Rescue medicines. I always have migraine rescue medicines in my bag in case I have a migraine flare while I am out. I also carry Epi-Pens with me due to the risk of an anaphylactic reaction that comes with my MCAS (Mast Cell Activation Syndrome.) Additionally, I always carry Benadryl liquid-gels to treat mast cell reactions.
Daily medicines. If I’m going to be gone during a time I need to take my daily medications, I make sure I have them with me. If there is any chance I might be delayed and be out when I am due to take my evening meds, I take a dose of them with me.
OTC (over the counter) medicines. The basics: NSAID; pain reliever; antacid.
Safe snacks. I carry raw almonds because they are good for a long time and don’t have to be temperature-controlled. A protein snack helps when I am getting a migraine flare. If I’m going to be gone all day, I’ll often take an RxBar as well. The carbs give me an energy boost.
Electrolytes. I often find that taking electrolytes helps reduce a migraine flare or mast cell symptoms. I prefer a brand that comes in capsules, which I can easily wash down with water. No muss, no fuss.
Ink pen. I carry an ink pen with me that has a grip that I can comfortably use.
Small notepad. So I can write things down, because my memory’s not as good as it used to be.
Sunglasses. A necessity for migraineurs.
Face mask. I carried (and used) face masks long before the pandemic, to help avoid inhaling fragrances. I use a cloth N-95 mask.
Cefaly. If I’m going to be gone all day, I take my Cefaly device with me in case I experience a migraine flare. This device stimulates the vagus nerve and helps reduce or eliminate migraine pain. I have a Cefaly Dual, which is much smaller than the original. It’s easy to take it with me in its protective case.
The Basics: phone; wallet; keys
{I would have included more pictures, but Word Press wouldn’t upload more than one for some reason.]
What do you take with you when you leave the house?
I’ve been reading a new (to me) blog this week, written by a person with multiple chronic debilitating conditions.
This post, in particular, struck a chord.
So few people understand how isolating a chronic illness or other disability can be – especially if it includes severe allergic reactions to “everyday” substances like fragrances, chemicals, dust, dander, mold, pollen, or food.
As a disabled person’s world shrinks, their social network, family, and close friends becomes ever more important, if they are so fortunate as to have any or all of these. In the author’s words:
Having our basic needs met makes the difference between living well with pain and illness and merely existing.
I am very grateful for all that Spousal Unit does for me, even on the days when I feel too awful to express my gratitude or affection.
I still fight, many days, to live well rather than merely existing. Without Spousal Unit’s care and assistance, I’m not sure how long I would even continue to exist – basic needs like grocery shopping, cooking, cleaning, or getting to doctor’s appointments are often just too difficult to accomplish by myself.
Who do you know that might be isolated? Falling through the cracks? Barely keeping their head above water, or a roof over their head? How can you help?
A text, an email, a call, a card, a visit – all mean the world to someone who’s “shut in” and isolated.
A ride to the grocery store, or to a doctor’s appointment, could mean the difference between living well and not eating nutritious meals or not getting necessary healthcare.
Offer to pick up something from the drug store, or grocery store, or a restaurant for them. Or give them a gift card for Wal-Mart or Amazon or someone else who delivers goods they need to their door.
It’s too easy to become too busy and not make the time to help others. You can’t do it all, but try to find ways to help someone else who can barely do anything. It might mean the difference to them between living well, merely existing, or ceasing to exist at all.
Once upon a time, there was a deranged-looking (or Furiously Happy) ethically-taxidermied raccoon with jazz hands named Rory. (The raccoon was named Rory, not the jazz hands because that would just be weird – plus, each hand would require its own name, no?)
Rory became a book cover, and he became one of the mascots of The Bloggess and her tribe. Rory is our mascot because he is, in The Bloggess’s own words, “broken in just the right way.” His image now appears in many guises, including buttons, keychains, and apparel.
Several months ago, I purchased various items of Rory Wear to bolster my morale. I am a chronically and debilitatingly ill veteran who is desperately fighting to complete graduate school, and I thought Rory Wear would lift my spirits and encourage me to continue the battle. (Spoiler alert: It does.)
My particular favorite is the tie-dyed Rory t-shirt. (Some of you will be familiar with the tie-dyed Rory the Raccoon t-shirt, thanks to this post.)
This shirt is like a ray of sunshine blasting through the darkness. Even if you feel like this, when you get a glimpse of Rory (with tie-dye) in a mirror you will feel a jolt of amusement. You will remember (I hope) that #DepressionLies and that you don’t have to be miserable, even if your life truly sucks (right now).
Another benefit of wearing a tie-dyed Rory t-shirt I just realized today, as I was dragging my broken and decaying body to the VA clinic, and it is this: no matter how bad you think you may look, you will probably not look as deranged as Rory; therefore, you cannot help but look better in comparison.
Also, the tie-dye is great body shape camouflage. 😀
So I rock my tie-dyed Rory the Raccoon t-shirt to remind myself to look for the good, look for the amusing, look for the joy, and fight to be #FuriouslyHappy.
(If nothing else, you’ll give other people something to talk about – “Dude, What is *up* with that shirt?”)
NOTE: Although it may sound as if I have received complimentary Rory Wear or been compensated in some way, I assure you that I paid for all of my Rory apparel out of my own pocket, no one asked me to endorse it, and The Bloggess is blissfully unaware of my blog and its contents. However, I *absolutely* endorse these products!
If you want your very own Rory apparel, you can find it here. This is not an affiliate link, and I will receive nothing. All proceeds go to support the lovely and talented Bloggess, Ms. Jenny Lawson.
NOTE: For those of you who do not know yet, Furiously Happy is Jenny Lawson’s wonderful book about dealing with mental and physical illnesses and choosing to find happiness. You can read more about it here.
NOTE: There are approximately 160 different styles of shirts. Read the details for whichever shirt interests you. The tie-dye shirt is 100% cotton, and does not irritate my allergies. However, many of the shirts contain synthetic materials. YMMV.
Surgery went very smoothly. It was a quick and relatively painless procedure [post pending]. I did not feel loopy or drowsy afterward, and had a perfectly normal afternoon following surgery.
Now that I have learned the benefits of frequent icing post-surgery, I use significantly fewer painkillers. Don’t get me wrong – you should definitely use them if you need them! I took painkillers at the minimum allowed interval for many days after my SLAP repair – that recovery was brutal.
But I have found frequent icing, elevation, and Tylenol to be sufficient for my last two surgeries. However, it must be said that I have always had a high pain tolerance, which has increased even more after nearly two decades of migraines.
Manage your pain responsibly, and in the way that is optimal for you, in consultation with your doctor.
So now I’m in a soft cast for two weeks, and sleeping in a sling at night to protect my wrist – never comfortable or convenient, but a necessary evil.
I have to say I am incredibly grateful for arthroscopic surgery – it makes the procedure so much less invasive and the recovery so much easier.
I realized as I was in-processing for surgery that it has been four years since the initial injury. I strongly hope that this will be the last corrective procedure, and I can finally put that incident behind me! Beware slip and fall injuries!
WARNING: If your prescribed painkiller includes Tylenol (acetaminophen), do not take additional over the counter Tylenol (acetaminophen). Pay close attention to daily dose limits. Exceeding the daily maximums can cause liver damage.
I take Tylenol instead of prescription painkillers, NOT in addition to them.
My entire life has changed as a result of having a chronic disabling health condition. Here are some of the ways I’ve become like a stereotypical Millennial as a result:
To read more about Millennial research, see here.
To see how Millennial you are, take this quiz.
According to the quiz, I am 76% Millennial, while a typical Gen X’er is only 33% Millennial. If I had a piercing or a tatt, I would have scored even higher. (I intended to get my first tattoo this year, but, you guessed it, allergic!) Having a tattoo would have made me 84% Millennial.
How has living with a chronic disabling illness or injury changed you? How Millennial are you (and why/why not)?
My diet (and my life) have gotten complicated. I hope to write more about that soon. Basically, I have been having allergic-type reactions to many foods I have previously been able to eat, and my diet is very restricted right now.
To go along with that, I have a complicated medicine routine. My newest medicine has to be taken 4 times a day, on an empty stomach. So I have a schedule of medications that begins when I wake up and goes throughout the day until I go to sleep, and requires me to deconflict one of my medicines from all the other medicines (and food), and requires that I take the new medication on an empty stomach (no food from 2 hours prior to 30 minutes after). Yeah…
So I wake up, take the empty stomach med, wait 30 minutes, take another med, and eat breakfast, so that 1 hour later I can take my next med. Did I mention I’m not a morning person, and don’t function very well when I first wake up?
The LAST thing I feel like doing half an hour after waking up is hassling with breakfast.
I used to eat several hours after waking up, when I had the capacity to deal with making food. But now when I eat is dictated by my medicine schedule. And what I eat is dictated by my allergic-type reactions.
Currently, I am having a drink for breakfast that we jokingly call “Green Slime.” (You would probably call it green juice, or a green smoothie.) We call it green slime because it looks like duckweed:
The recipe comes from one of the low histamine chef Yasmina Ykelenstam‘s cookbooks – she calls it green lemonade, although the recipe includes no lemons. It’s mostly green vegetables, with apples as sweetener. I also add chia seeds, for fiber and protein.
We first tried making green slime in the blender. It’s do-able, but I don’t recommend it – for 2 reasons. First, it’s hard on the blender motor. Second, the consistency is like applesauce, which can be unpleasant to drink if you’re squeamish about textures.
Having determined that I liked green slime in theory, and would likely be drinking more juices, we bought a juicer. I prefer a minimalist kitchen, and try not to buy extraneous kitchen tools, but this has proven to be a very useful device. [And the slime is now a juice consistency, rather than an applesauce one.] But I digress…
Because of my health condition, I need to eat very fresh foods. So I can’t make green slime the night before and leave it in the fridge overnight. Thus, every morning, veggies and fruit need to be chopped and processed through the juicer. Working a knife within 1/2 hour of waking is not a good idea when you’re as out-of-it as I am in the morning.
It is highly probable that, left to my own devices, I would starve or die of malnourishment.
Fortunately for me, I am not left to my own devices. Spousal Unit wakes up hours earlier than I do (for reasons that are completely inexplicable to me), and is gracious enough to prepare green slime for me every morning, even though Spousal Unit does not drink slime.
Each morning I take my first medicine, wait 30 minutes, take my second medicine, and then stagger out to the kitchen. I open the refrigerator door and find a glass of green slime waiting for me.
Which means that Spousal Unit has cut up the fruit and veg, fed it through the juicer, poured the green slime into a glass, added chia seeds, stirred, and left the juice for me – every morning.
And all I have to do is drink it. And then take my next medicine an hour later. Totally do-able (most days).
And this is why I say “love is green slime.” Thank you, Spousal Unit!
For a long time, I was so sick that I was unable to advocate for myself. I didn’t have the ability to think coherently, and I didn’t have the energy to fight for care (not “good” healthcare, not “better” healthcare, just healthcare Period).
[Fortunately, I seem to be responding to recent medications, which is giving me more of an ability to advocate for myself.]
When I became absolutely desperate, I scraped myself up and went to my Tricare PCM to fight for care. I didn’t get half of what I needed, but I got a little. Very little. (He also tried to kill me by prescribing the wrong meds, against my protests.)
Do you have any idea how dispiriting it is to spend all of your energy on one desperate fight for survival, and fail?
I went back to lying on the couch in front of the television in a dark room.
What really made a life-altering difference was when I finally started receiving care from the VA. (Yes, my experience has been mixed, and yes, many veterans are still receiving inadequate care from the VA.) However, my VA PCM, though horrendously overworked, listened to me, believed me, and started getting me the care I needed.
If not for my VA PCM, I would have lost the use of my left wrist permanently. I know this to be true because my orthopedic surgeon informed me that this was the case. After 27 months of neglect by Tricare, my wrist was almost beyond repair by the time I finally saw a surgeon.
In addition to a badly damaged left arm, I also have a chronic, debilitating disorder. After 15+ years, I still have only a partial diagnosis. However, I have been unable to get the help I need from Tricare.
I went a little over a week ago to try to see a Tricare Patient Advocate. I got as far as the receptionist. He asked me what I wanted. I told him that I had complex health problems and needed someone to help me manage my case.
I told him I wanted to know that *someone* in Tricare actually cared whether I lived or died.
The receptionist told me that if I filled out a bunch of forms AND WENT AND FOUND MY OWN PROVIDER THAT UNDERSTOOD MY DISORDER AND WAS WILLING TO OVERSEE MY HEALTHCARE, I could apply for a waiver for an off-base provider.
Why this response was completely unhelpful:
BOTTOM LINE: I went to Tricare Patient Advocacy for help, and was told to help myself. I said, “My case is complicated. I need help managing it.” And I was told, “Go find a civilian to help you manage it.” I asked Tricare for help when I was at the end of my rope, and their representative sent me away to fill out a bunch of forms that would only be useful once I had found my own provider.
Action Items: I sent an email requesting a case manager. If this is unsuccessful, I will file a complaint/grievance with Tricare. (On a good day, when my brain is working and I have enough energy.)
Reflection: How many people are in the Tricare or VA systems that are too ill or disabled to fight for the care they desperately need? Who fights for the warriors (and their families) that can no longer fight for themselves? Do anyone actively care whether they live or die?
Update: Case Manager assigned within 24 hours of email being sent.
Minimalism. It’s a trend/movement that’s been picking up steam for at least a decade.
Some accidentally – they travel with just a backpack, and decide life is better with less baggage. But some become minimalists out of sheer survival – because their health is so poor they just can’t continue to live life the way they used to.
A smaller house/apartment, fewer things to maintain – choosing to downsize can make life easier to handle logistically and financially. It can also make life easier to handle psychologically. But, in many ways, shedding possessions is the easier course of action.
Shedding commitments is much more difficult.
Duty. Responsibility. Taking Care of Others. Social Responsibility. Civic Duty. Family. Friends. Job. Church. Volunteerism.
We are so busy, in our current culture. We pride ourselves on how busy we are. We compete with others over how busy we are, as if that is a symbol of our worth. We are human doings, not human beings.
Until.
Until we get the news, or the diagnosis. Until something happens that alters our priorities and shifts our perspective.
Until we remember that the privilege of being is the most important thing.
For a very long time, I tried to keep doing all the things. I got sicker and sicker because I tried to power through it. I “couldn’t afford” to be sick. I needed to fulfill my responsibilities at work – one hundred percent or more. I had to fulfill my commitments to my family, and friends, and to the organizations for which I volunteered, and to the kids I mentored, and, and, and…
And then I woke up one day and couldn’t do ANY of the things.
I couldn’t keep the plates spinning anymore. And they slowly started crashing to the ground…
I fought it for a long time, even after that. “I can’t keep them all spinning, but I should be able to keep these three spinning.” CRASH! “Surely I can keep these two spinning.” CRASH!! “Come on! I can keep at least ONE spinning, right?” CRASH!!!
And then I wallowed, frustrated and unwilling to believe that I could do NONE of the things.
But facts do not change simply because we do not like them.
And the fact is that I am currently dealing with either severe allergies or an auto-immune disease (or both?).
And suddenly life is becoming much more simple, due to survival minimalism.
I used to find it very difficult to get rid of papers and books. Although I have been trying for years to downsize and become more minimalist, books and papers were the challenge for me.
I love books. I love physical books. I have resisted getting an e-reader because I like to hold books in my hands, and write notes in the margins, and highlight important parts of them, and even mark reference sections with book darts. Book darts.
I once lived out of a backpack for a year – worldly possessions in storage, traveling the world. Know what I missed? My books.
But now… I am allergic to book mold. And possibly to dust as well.
And, suddenly, old books and old papers cause an allergic reaction that makes me ill – for days.
So now I am parting with books, and reducing the papers (currently in binders, and in filing cabinets, and in stacks).
I will most likely purchase a high-quality scanner, to save some of the information on those papers, and an e-reader, to replace some of those books. And, although parting with the books makes me sad, it also feels like freedom. I don’t dither anymore over whether to keep a book or a document.
It has become very simple: It all must go, because it makes me ill.
The same thing is happening with my diet (post pending). I have passed through the mourning period for all the foods I can no longer have (pizza commercials were torture!). Now I can watch food commercials on TV with disinterest. Easy to do, when you know eating it will make you sick for days…
Likewise for social obligations. Initially, I felt guilty for all the obligations I could no longer fulfill. But the current reality is that I can’t leave my house without getting ill. The outside world is BRIGHT, LOUD, and full of FRAGRANCE. Not to mention ALLERGENS. So, if it’s not critical to my health (doctors’ appointments), I’m not leaving the house. Sorry, not sorry. You’re welcome to come visit me, if you’re not wearing FRAGRANCE (that includes scented laundry detergents and fabric softeners).
It’s getting all Oregon Trail up in here.
Remember playing Oregon Trail, and starting out with all the items you thought were essential, but jettisoning more and more of those items as the trip went on? Survival Minimalism.
“But that’s a Family Heirloom!” “The Indians are gaining on us – toss it overboard!” “But that has sentimental value!” “The oxen are too weak from thirst – leave it by the side of the trail.” Survival Minimalism.
Priority Shift. New Perspective. Life suddenly becomes very simple.
Do. Or Do Not. It has become a no-brainer.
I’m letting go of the things that make me sick.
I don’t “should” on myself anymore. I do what I can for others, and I let the rest go.
The world rushes on past, in its busyness, and I am here, in my quiet eddy, learning how to be. Striving to be…healthy.
It’s a crucible, and all the non-essential things are being burned away.
Survival Minimalism. It’s not for everyone, but it might be for you.